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PODCAST

CAH PULSE

CARES Foundation

CAH Pulse takes us on a journey to educate and bring attention to the challenges and triumphs of individuals living with Congenital Adrenal Hyperplasia (CAH). Each month patients, family members, medical professionals, researchers and caregivers share their stories, experiences and advice living with this challenging condition. Our hope is to further connect and champion this incredible community. *This podcast was recorded under a SAG-AFTRA Collective Bargaining Agreement*

science non-profit

All Episodes

38:21

Season 2 l episode 11 Dimitri: The Long Game of Drug...

CAH PULSE ·

2025/12/02

In this episode of CAH Pulse, host Stephanie Erb and CARES Foundation director Dina Matos sit down with distinguished scholar Dr. Dimitri Grigoriadis of Neurocrine Biosciences for a rare behind-the-scenes look at how medications are discovered, tested, and brought to life. From the origins of CRF research to the challenges of treating a rare disease like CAH, Dimitri explains the drug-development journey in an accessible, fascinating way—complete with scientific surprises, first hand patient

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38:26

Season 2 l Episode 10: Brittany: Demanding Change...

CAH PULSE ·

2025/10/17

In this uplifting episode, Stephanie and Dina speak to Brittany, an outspoken 29-year-old living with CAH. A self described "open book", Brittany shares her life's journey from her diagnosis as a toddler, thanks to her mother's intuition and advocacy, to her drive to find a cure for CAH. Along the way Brittany reveals she has suffered from weight gain, severe acne and even a femoral stress fracture. Her path also includes a life changing moment after meeting others for the first time who are also

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42:27

Season 2 | Episode 9: Kristina: "We're going to call...

CAH PULSE ·

2025/09/03

In this touching episode, Stephanie and Dina speak to Kristina, a young mom to 2 little girls who's younger daughter lives with salt wasting CAH. Kristina recalls her journey from giving birth to Franny through her now fifteen months of life, including feeding routines, hospital visits, medication and explaining her condition to family, day care and friends. Unsurprisingly, the day Franny was born, Kristina was told "something is wrong with your baby, your baby has ambiguous genitalia". Grappling

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38:12

Season 2 | Episode 8: Lesley and Louise: No Shame!...

CAH PULSE ·

2025/06/25

In this gripping episode Dina and Stephanie tackle a most important and controversial topic, putting an end to the dangerous stigma which far too many children (both boys and girls), parents and adults living with CAH encounter, causing adverse effects on their lives. This episode is a crusade to make a difference to the lives of so many who live in darkness and risk thanks to the dangerous and unnecessary shame that often exists with CAH. Joining Dina and Stephanie are CARES Foundation Pioneer

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34:56

"Go Live Your Life as Normally as Possible"...

CAH PULSE ·

2025/04/17

In the mid 1960's, Tim was diagnosed with CAH just weeks after he was born. His CAH simply didn’t set off many alarms with his medical team, nor his parents. As a result, he seemed to breeze through time with little challenges and even went 50 years without a single adrenal crisis! However, Tim had learned some difficult news at the age of 30, thanks to the long term effects of prescribed prednisone, when a bone scan showed that he had severe osteoporosis. At 30 years old, Tim had the bone density

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32:32

Season 2 | Episode 6: Dr Su: Words of Wisdom:...

CAH PULSE ·

2025/03/05

In this masterfully eye-opening episode, Stephanie and Dina pick the brilliant mind of CARES Foundation's Medical Director, and Professor & Pediatric Endocrinologist at the NY Presbyterian Weill Cornell Medical Center, Dr Karen Su. Dr. Su helps to clear up the confusion over "stress dosing" an adult or a child living with CAH.Of great importance to Stephanie & Dina has been to address the idea that a stress dose needs to be administered when someone is predicted to have emotional stress

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35:46

Season 2 | Episode 5: Raelie: CAH Does Not Define...

CAH PULSE ·

2025/02/11

Is ten-year-old Raelie unphased by her CAH? Find out in this important episode of CAH Pulse where Stephanie and Dina speak with Amanda and her strong, brave and laid back 5th grade daughter, Raelie. This insightful mother daughter duo gives us an up-close view through the window of their daily lives navigating and troubleshooting life with this rare condition. Amanda explains their family hardships as well as their successes in managing her daughter's CAH, from her unsurprising fears as a mom

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31:36

Abby: CAH Mom? Or NASCAR Driver!

CAH PULSE ·

2025/01/07

In another compelling episode, Dina and Stephanie introduce us to Abby, a mom of two small boys, one of which is her “salt waster”. Little Nash is only seven months old but he is already doing amazing things like swallowing medication in pill form and being the happiest joyful baby Abby could have hoped for.However, not everything with baby Nash is status quo. Yes, although proving to be challenging, his family is managing his CAH quite well. Except for one night when her husband was out of

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37:34

Ryan: The Son of a Rainbow Maker

CAH PULSE ·

2024/10/29

In this memorable episode, Ryan, who has seemed to manage his classic salt wasting CAH head-on with an organized, matter of fact approach, has been faced with new challenges to consider now that he is in his 30's. Ryan's mom, Heidi, knew in his first 2 weeks of life that something was just not right with her baby and thanks to her intuition and diligence she did not stop until the hospital found a diagnosis. Once she was told her newborn had CAH, she began her quest to give Ryan the very best life

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38:17

Season 2 | Episode 2: Lydia: "I had no idea getting...

CAH PULSE ·

2024/09/03

In this episode of CAH Pulse, Stephanie and Dina speak with Lydia who was diagnosed with classic CAH at birth and although she received relatively good medical care from the start, she had little understanding about her condition. As a young adult, Lydia reveals that she foolishly decided to test the importance of taking her medication by eliminating it altogether. She also explains how her world took a positive turn after college when she began speaking with a therapist and ultimately the CARES

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37:49

Marc: Living Life to it's Fullest - "Nothing Holds Me...

CAH PULSE ·

2024/05/17

Marc wasn't formally diagnosed with salt wasting CAH until he was the age of 3. Up to that point, Marc's mother had spent his infant and pre-school years simply trying to prevent him from vomiting all the time. The only remedy that seemed to work was constant high doses of salt. Lots and lots of salt. Although she was percieved as a neurotic helicopter first time mother, and doctors simply didn't value her hunches and her conviction that something was not right, her instincts were spot on and in the

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38:41

"The Hospital Refused to Recognize my Daughter as a...

CAH PULSE ·

2024/03/28

Welcome to another astonishing CAH story. In this 6th episode of CAH Pulse, Stephanie and Dina learn the startling details of David and Brianne's CAH journey with their little girl who was born into an uncertain world. Not only was her birthday during the height of the COVID-19 pandemic, but their newborn was diagnosed with salt-wasting CAH in a hospital with medical professionals who knew little to nothing about the condition.David and Brianne open up about their harrowing journey from their

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37:06

Lindsey - "I Wish I Had Known More When I Was 16, 15...

CAH PULSE ·

2024/02/28

"We can assume kids are gonna have questions; so create a relationship outside of CAH and the rest will follow". One of the poignant thoughts belonging to Lindsey, a warm hearted, outspoken young woman who shares her compelling story of growing up in the midwest as a typical girl with friends, playing sports, going to college and now at 30, working as a geographic information systems technician. However, atypically, she shares how she humbly navigates life unsure of the full details of her CAH.In

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33:50

Trust Yourself - College Life with CAH

CAH PULSE ·

2024/01/30

There are varying degrees of fear that parents experience while raising a child with CAH. These fears are often from the challenges of medicating their child properly to ensure their safety from a looming adrenal crisis. Understandably, anxiety and worry can be off the charts. But Cares Foundation wants you to feel rest assured, with the proper attention to detail and care management those with CAH can live a typical life! And Joey, is living proof. Join Dina and Stephanie as they speak with Joey

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28:54

Lesley Part 2 - ”I Don’t Want Others To Feel Like I Did”

CAH PULSE ·

2023/12/19

Despite her difficult journey, Lesley, who grew up in a children's home in England, continues her explanation of how she moved to the states and got the help she needed after living most of her life not knowing she had CAH. This is the second of a 2 part series where Lesley wraps up her inspiring story of survival, connections and giving back.

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29:30

Lesley Part 1 - Feeling Lucky

CAH PULSE ·

2023/12/08

When Lesley's mom was unable to care for her, she was given up to the courts of England. Join Stephanie and Dina as Lesley shares her lowest of lows, love and loss, misinformation and surgeries she was never told why she had. Living most of her life unknowingly with CAH, Lesley’s is a story of survival, victory, resilience, giving back and feeling lucky.

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30:26

Connections - You Are Not Alone

CAH PULSE ·

2023/11/13

Connecting with someone who knows your fears and challenges is a crusade Dina Matos, Executive Director of Cares Foundation and Stephanie Erb, long time career actress, advocate and mom of a grown child with Congenital Adrenal Hyperplasia have been on together. They bring us this compelling first episode of CAH Pulse, a podcast born and bred to educate, connect and give hope to those living with this challenging rare condition. Here Stephanie tells her shocking story of adopting a child at birth

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